It's a new new feeling

 ALS feels like you are thrown into the deep end of the pool. There are so many new feelings that you feel, most of them unpleasant, so many new situations that you face that no one prepares you for. In fact most of them may be overlooked. That is why I have tried to list them down.

Lack of Privacy 

You can kiss your privacy goodbye because when you need help for anything and everything there will be always someone around you. Not to mention that a bathroom visit is a whole event in itself, so everyone knows when you "go". So embarrassing! Sure you get alone time a lot, but the compromised privacy definitely takes getting used to. 

Random Touches

Thankfully sensory nerves remain unaffected in ALS. But the amount of physical interaction I need because of my limp body is something that I had to get used to. I have to be stood up, sat down, pushed, pulled, transferred, yanked, jostled to be comfortable enough.

Wheelchair rides

I need a manual wheelchair that has to be pushed by someone. It always feels like a roller coaster ride to me. Now if you are a person that enjoys roller coasters, well and good. But to me it feels scary especially when the wheelchair has to pulled in reverse over obstacles because I can't see where I am headed. Also, to be seen in a wheelchair is a mental barrier that us patients have to overcome.

Changed attitudes 

This definitely doesn't apply to everyone but some people's attitudes towards you will change over time. It is not so explicit  and I can't put my finger on it, but it feels like either your opinion does not carry as much weight as before or you feel pitied. Anyway, I am thankful to those who treat me like before.

Awkward conversations 

There are some awkward moments when people who have their heart in the right place don't know what to say to you. I just try to smile and nod. I wish "How to interact with persons with disability" was taught in schools and corporates.

The truth about ALS is there are a host of new feelings that you have to deal with and learn to do so in a short span of time. Honestly I can only say that you have to suck it up because there is no other choice.

Comments

Post a Comment

Popular posts from this blog

A Shift in Mindset

 At the time I started falling sick, I was leading a very busy and self dependent lifestyle. Living alone in a foreign, non-English speaking country for many years pushes you out of your comfort zone and you get used to figuring out everything on your own. My typical weekday would start with the German language A2 level revision class from 6 to 8am. Then I would quickly get ready and login for work, checking my mails while eating muesli. I would whip up a quick lunch at noon, logout at 5 or 6pm and then step out for a visit to the supermarket or just a walk if it was not too cold, return home, cook dinner, watch some TV. Finally I would retire to bed after doing the dishes, which was my least favorite task. On weekends I would again attend the German language B1 level class from 8 to 11am, clean the apartment, do the laundry, and maybe treat myself to a good meal at a restaurant. I had to troubleshoot all issues on my own, be it a clogged drain or a fixing the hot water. All while taki
Read more

M.I.A.

Yes i  have been mia. Facebook probably thinks that I am dead. Amazon, Nykaa and Myntra are sending me We miss you emails. But I haven't disappeared from the face of the earth. At least not yet. The fact is at the age of 32, I started showing weird symptoms and was eventually diagnosed with ALS. Let me give you a moment to Google that. Yes it is the Stephen Hawking condition. Yes it is fatal. And no there is no cure yet  Needless to say my life completely changed after the diagnosis and to make matters worse i was progressing rapidly. I had to move back to India. Soon I lost the ability to use my hands and arms. I continued to work using my knuckles to type which by the way is slow and painful. Gradually my legs were affected too. As of today, I can't do much with my hands. They are pretty much lifeless, I can't eat food on my own, can't use the TV remote, or even my phone. It has been so long since I touched my own face or combed my own hair. I can no longer sit up or
Read more

On the rocks

 A few years ago, the Ice Bucket Challenge had become popular. Everyone from film stars to sports legends were posting videos of them getting drenched in icy waters to jump on to the viral trend. But I wonder how many people knew its real purpose. The challenge was meant to create awareness about ALS and to expedite the research for a cure . Like all things viral, the trend has long died. And unfortunately so have many people from this sadistic disease. ALS has been known to mankind now for almost a century, but we are yet to make the breakthrough. All we have is one approved medicine - Riluzole, sold under the name Rilutor in India. The medicine claims to prolong survival by 2 to 3 months. 3 months? Really? Even a season of Indian Idol lasts longer than that. This means I would die before knowing who won the season. LOL. I can't help but wonder what is taking so long. None of the neurologists I met seemed disturbed that they were faced with a problem that they could not solve. The
Read more